Saturday, January 18, 2014

Long Overdue Update

I realize it has been a long time since I have written any posts about Kahsay's progress. Many people continue to ask us and ask how they can pray for Kahsay.  I find writing it in my blog is the easiest way to update people.  Since I really despise writing I will just do a list format.

1. Group Therapy:  We do this one time per week.  Kahsay is in the infant group because he is not mobile yet and because the chaos of a toddler group would make it extremely hard for him to stay regulated.  We are joined by two amazing therapists and 4-5 other parents with children.  Our focus for Kahsay is solely on teaching him to regulate himself in group settings.  He does not participate in many of the activities but just tries to take in his surroundings and attempt to join in the group activity for short periods.  I am learning so much on how to help Kahsay stay regulated (calm state) when being introduced to over stimulating environments.  He has progressed from crying the entire time to crying on and off.

2.  Home Therapy:  We have a therapist that comes to the house one time per week.  He works with Kahsay in areas of gross motor, fine motor, and self regulation.  He has been a true gift from God and I can't imagine where we would be without his support and love for Kahsay.

3.  Occupational Therapist Grad Student:  We did have an amazing OT student that was coming to help Kahsay one time per week.  It gave me a break and I had the satisfaction that he was in good hands and working on therapy.  She now is doing and internship to finish out her schooling and was moved out of Grand Rapids.  We miss her dearly and will attempt to find another.

Kahsay is still only on liquids with purees only when he is in the mood.  He is on a high calorie Pediasure and drinks it thickened through his bottle or g tube.

I am feeling ready to get him back into feeding therapy or try an intense feeding program where we stay overnight for a few days.  He still has an extremely sensitive gag reflex and hates any food that is textured.

Gross Motor:
1.  Kahsay can:
- Go from laying to sitting
- Go from sitting on a stool to standing with help.
2.  Kahsay is working on:
- trying to hold onto objects in hope he will be able to hold onto a walker.
- weight bearing on his hands so he can learn to creep and crawl which would be so important for walking someday.
3.  Kahsay's goals this year:
-  Go from sitting on the floor to standing
-  Walk with a walker a few steps independently
-  Hopefully creep and crawl.

Kahsay's special seat so he can sit up in shopping carts.  He thinks he is so big in it.

If you are not friends with me on Facebook, I thought I would add this video.  I could not figure out how to get it to load onto Blogger so I just linked it to Facebook.  Hopefully it works.

Kahsay standing.

Fine Motor:
1.  Kahsay can
-  hold some objects in his right hand firmly and bring them to his mouth
- use his left hand as a helper and with more purpose than a year ago.
2.  Kahsay is working on:
- exploring toys on his own.
- holding an object with his left hand
- finding toys on his own when he drops them.
- holding his own bottle.

- Kahsay had eye muscle surgery in November on both eyes.  Recovery was not too terrible.  We have seen some improvement with Kahsay's fine motor.  Since Kahsay is diagnosed with Cordical blindness, eye surgery does not cure his vision impairment.  Due to Kahsay's brain damage, his brain has a difficult time processing what he sees.  His vision can come and go depending on his environment, health or lack of sleep.  We notice at home he sees pretty well, but in environments where there is high stimulation he tends to only see what is right in front of him.  We pray this will continue to improve and work with an amazing specialist and vision therapist to help us.  This can improve but to what extent we do not know yet.

Kahsay just saw the Endocrinologist this week.  He still weighs just over 18 lbs.  He has weighed 18 lbs since October of 2012.  His specialists are concerned with his lack of weight gain and we are working on coming up with more options to help him gain weight.  Kahsay's body does not handle volume very well so adding any more ounces needs to be done over a long period of time. We have tried the night drip through his tube but he is so active it ends up coming out with Pediasure everywhere.   I am extremely frustrated by this.  At this point his height has grown slowly so the doctor does not want to pursue further growth hormone testing but does want to continue to keep tabs on Kahsay.  Please pray we are able to find the best feeding options for Kahsay.  I am not ready to give up his oral feedings but am willing to do so if the doctors feel feeding him through the g tube only will be our best option.  Maybe if he would stop moving for one second he would finally gain weight :).

Right now his seizures are under control with his medication.  We will have to have EEG's periodically but right now we have not seen any seizures.

As a family we can't imagine life without our little man.  He has definitely changed our lives.  His sisters still fight over him and everywhere we go people can't get enough of him.  Most of the time I do very well living in the present and just praising God for the progress we see.  If I am honest some days I over focus on the future and wonder how our life will look.  I can get caught up in the fact that we will need a babysitter for Kahsay the rest of his life.  He most likely will not ever be able to walk up a sledding hill by himself.  He may never know what a sunset looks like. We may never teach him to ride a two wheel bike or dive off the diving board.  He may never enjoy his sister's favorite meal of steak.  Will he be able to "hang" with kids his age and play creatively?  Will we need to make adjustments to our home that are handicap accessible?  When we have family game night, what will Kahsay's participation be?  When will he be able to handle being in large group settings without being overwhelmed?  And the list goes on and on.....  I know these are feelings I have to work through, and some of them may not even come to fruition.  Jason and I constantly remind ourselves that we serve a God that knows the answers to all of these.  His ways are higher so why even worry.

There.....long overdue progress report done!  Who knows when the next one will be :).